So hard to believe that two weeks have past since my last post. I can definitely say that time flies these days. Well I will have to back up in order to get all the events over the past two weeks in. For starters, Bailey’s first week of school went great! She was so happy to be back with her classmates and she absolutely loves her teacher. We even got to get back to the routine of work, homework, studying and all the fun stuff of everyday life. It was so great to see our lives going through all of those motions again.
We did make our first trip to New York. Bailey, Mimi and I flew out of New Orleans on August 22nd at 6:30am…yes I did say AM!!! I was a little worried as to how Bailey would react seeing how she has never flown before, but much to my amazement she did awesome! Another point that proves prayers really do work! The staff at JetBlue were so helpful with assisting me to get her on and off the plane which made our travel that much easier. Once we arrived in New York another great adventure lied ahead…the taxi ride! Well as you can imagine this was all new to Bailey and Mimi, but since I have been to New York before I knew what to expect. The staff at the airport were also very helpful with getting us a taxi that could hold our luggage as well as the wheelchair..but then the real fun started. Needless to say the taxi driver was every bit of a typical New York taxi driver, so the high speeds and weaving in and out of traffic were in great abundance. As we are half-way through the ride Bailey grabs Mimi’s arm and looks at her and whispers, “Mimi we are going to die huh?”…I must say this was the funniest thing ever as we are trying not to laugh at her because she was being so sincere, but we could not help ourselves! So after that eventful trip we had finally reached our destination…the Ronald McDonald house! Much to our surprise it was very easy getting checked in and getting our things in the room. The place is very nice and only a short distance from Sloan Kettering (the hospital).
After we were checked in we decided that we should take advantage of our day, so we took Bailey to FAO Schwarz (one of the biggest toy stores). She thouroughly enjoyed our trip there although she didn’t want any toys. Instead she opted for candy! The rest of the day we just spent walking around and enjoying the sites of New York in between rain showers. On Monday our appointments and meeting with the doctors begin. I must say this is a HUGE hospital. I was very impressed with the recreation center they have for the kids. I will post pictures so you all can see but by no means will the pictures do this place any justice.
The scans and meeting went well. Bailey wasn’t scared and was as brave as ever, considering this was a new place with new people. On Wednesday we finished up the last of her scans and we had to meet with Dr. Kushner, her new doctor that will administer her antibody treatments. Unfortunately the scans did not give us the news we were hoping for. The MIBG scan, which is used to detect the neuroblastoma cells, showed that Bailey now has a new spot in her skull. As of right now they are not sure if it is another tumor or just cells but it is definitely something that was not there before. So we are in the waiting process to allow the final results to come in before making a plan of action, although it is pretty clear that she will need another round of chemo. After the meetings on Wednesday we headed back to the Ronald McDonald house to prepare for our flight home Thursday morning. As you probably guessed, we made it back safe and sound.
Our weekend was just as busy as our week, given the fact that Bailey’s blood drive was on Saturday. The turnout was bigger than I ever could have imagined. We had 109 people that were able to donate! This was outstanding considering our original goal was 50. My heart was so full of happiness to see so many people come to support my little girl. The joy I felt was very overwhelming. This is definitely a journey we are not going through alone. I feel so blessed despite all of the circumstances. God has a way of turning a not so good situation into something so much greater than you ever would have imagined…and HE is doing just that for me and Bailey. After everything Bailey had to go through during the week you never would have noticed. Her smile was just as big and as bright as ever and she made sure she was helping out in any way she could. Sometimes I forget she is only 7…this journey has made her grow up so fast, but I couldn’t be any prouder of her. She is one amazing little girl that never stops.
When we found out about the cells that showed up on the scan, of course I was caught off guard and the tears I can normally fight back found their way out. My sweet little girl looked at me with those big blue eyes and says “Mommie its ok, I can do more chemo. I am ok with that. I know this is what I have to do to get that cancer out of me so don’t be sad, I will be ok.” And she is right…she will be ok. I know that God is so much bigger than this and I am convinced HE has a greater plan for her life. I am so thankful HE has chosen Bailey to be an inspiration to so many…even me. I couldn’t imagine my life without her. She has blessed my life far more than I ever deserved.
Please continue to pray for us and especially for her. Pray that God restores complete healing so that her suffering will be over. Thank you as always for your support, donations and prayers. Your generosity make our journey so much easier….I cannot say thank you enough.
Well today is the first day of 2nd grade! Bailey is very excited to be able to attend school while we are home. This morning I had to go into work so Mimi had the pleasure of getting her ready and going with her to school. Before I left for work this morning I went to Gautreaux’s for a doughnut run, as I do every year on the first day of school, so she can have one of her favorite breakfast foods to set her off to a great first day of school. I received a text right before 7am to let me know that Bailey woke up on her own ready for school. This is something big for her because lately her sleep schedule has been late mornings (her body still requires lots of rest), which was one of our concerns with her going to school. Then shortly after 7:30 a second text came with a picture attached that said “Hey you it’s me Bay”…as you can guess Bailey took Mimi’s phone and sent me the picture above to let me know she was ready for school! Mimi sent another message shortly after 8am to let me know that Bailey was in class and they had a great morning. She told Mimi ” Mom bought be doughnuts…this is like the old days”.
How it makes my heart happy that after everything she has been through these past few months, she still finds normalcy at times. My hope was that she would never forget the little things we used to do before her illness. At times I find it very hard to incorporate our old routines into our new way of living, but as any parent, I do the best I can and times like these it gives me so much happiness to know my efforts do work sometimes! I am very thankful today that God allowed the little things to make the biggest impact when it counted most. At the end of the day, she is still a child that is living her childhood and we are making memories that will last forever.
Well as some of you know we are home!!! We got to leave the hospital on Friday, July 30th (my birthday) and spend the weekend at home which was a very nice birthday gift! Of course just getting home that day left no room for any celebrations but no need to worry we made up for it on Saturday, July 31st. Bailey was more than happy to go eat out at Shinto’s because of the hibatchi grill, one of her favorite things to eat! Needless to say our weekend passed very fast and we had to return to Tulane on Monday for more testing. When we arrived on Monday bloodwork was done and we planned for Bailey to give the remaining bone marrow that was needed to send to New York on Tuesday. So we spent the night in New Orleans on Monday and went to clinic on the Tuesday for the procedure.
What an adventure that turned out to be!!! Bailey has never had bone marrow collection done in the clinic before as it has always been done in the O.R. so we were a little leary of how she would handle this. Thankfully her oncologist, Dr. Kanter, gave her plenty of medicine to help ease the anxiety as well as the pain. Needless to say the procedure was very quick and she felt no pain…but then the after effects started! I can honestly say it has been a long time since I have wanted to melt away into the floor but Bailey quickly reminded me how that felt. You could have guessed her to be a canary that way my child was babbling!!! One of the nurses made the mistake of asking her if she had any secrets and of course that was all it took. Bailey started on and on about everything under the sun. I know my face as well as my moms was priceless!!! We couldn’t help but laugh because it was so very comical. On top of singing like a canary about personal issues, the medicine also affected her short term memory so every ten seconds she would ask the doctors if they were done. Needless to say after about the 50th time we couldn’t even answer her because we were all laughing so hard. After the procedure was done we got the great news that we could now go home until we get the call from New York telling us to get on a plane!
We have thoroughly been enjoying our time at home. It is really starting to feel somewhat normal again although we have only been home less than a week. It is so funny how it’s the little things you miss, like being able to wash clothes and eating a home cooked meal instead of take out! We also were able to attend orientation for RCE last night and that was awesome! Bailey has been a little skeptical about returning to school but after seeing all of her friends last night and meeting her new teacher she cannot wait until the day she can return full time. For now Mimi will home school her until after her radiation is completed, which will begin after our return from our first appointment in New York, but after that is complete she will begin going half days as long as her counts are up and she is feeling up to it. I am really praying that by the end of this year she will be able to attend a full day of school. That is a little goal we are aiming to accomplish as well as a few others, so please continue praying that we hit every one of them!
Until then life goes on and we continue to thank God each and every day for the little blessings he has bestowed on us. Some might find it ironic that even with the chaos that this illness has brought we still find laughter and a heart of thankfulness, but I just say this is life! We cannot control what happens in our life’s journeys, but we can make a decision to make the best of the hand we were given and that is exactly what we have decided to do. As I watch my 7 year old fight for her life each and every day, I cannot help but to be humbled with what HE has brought us through so far. I know our journey is far from over but I also know Bailey’s life journey has only just begun and HE has great things in store for her. Thank you as always for your prayers and support!
P.S. Please do not forget about the blood drive on Saturday, August 28th…we are really praying for a big turnout!
Blood drive for Bailey
Date: Saturday, August 28, 2010 Time: 9 am to 2 pm
Place: Rayne Fire Dept, 316 S. Adams Avenue
Goal: 50 sign ups. Please sign up by August 25
Leeann LeBouef at 337/277-8457
My name is Bailey Leon.
I am 7 years old and live in Rayne.
My parents are Coby Abshire and Brooke Leon.
I am the grand daughter of
Dalton & Sara (Leon) Arsement,
Kenneth & Glenda Abshire,
Frank & Eva Privat and Harvey & Lois Leon.
th withwww.bucksforbailey.com for my updatesI was diagnosed with high risk Neuroblastoma on March 4, 2010, a disease in which malignant (cancer) cells
form in nerve tissue of the adrenal gland, neck, chest, or spinal cord. The cancerous tumor is attached to my
spine, lungs and major blood vessels. In my case, due to the size and location of the tumor, this is very rare.
Neuroblastoma is rarely found in children older than 10 years and affects 1 in 100,000 kids.
I had surgery on July 8
vital to keep my blood counts elevated so that my immune system does not become promised. My transfusions
started immediately after my diagnosis.
th to remove the tumor. Then I will undergo 6 weeks of radiation. Blood transfusions areLess than 5% of the population donates blood creating constant blood shortages
You can donate blood every 56 days and platelets every two weeks
To donate blood you must be in good health, at least 17 years of age and weigh a minimum of 110 pounds.
There is no upper age limit. 16 year olds can donate who weigh at least 130 pounds and present a signed
“Blood Center” parental consent form. Wait one year after a body piercing. Individuals with high blood
pressure (below 180/100) or controlled diabetes can now donate. If you have medical questions or have
been out of the country since 1980, call The Blood Center’s Baton Rouge Donor Center at 225/819-9590
or Metairie at 504/887-2833.
Please drink a lot of fluids and eat before donating. Bring a Picture ID
Can’t give blood! You can still help. Please consider making a financial donation to
The Blood Center Foundation, 315 S. Johnson Street, New Orleans, La. 70112
Credit card donations can be made by going on line to www.thebloodcenter.org
Your contribution will help to fund a bloodmobile.